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  • ICNDonna
    replied
    Originally posted by Wilis View Post
    Hi Donna, thank you for your kind words. I do not have an attorney. When I called the Accutane class action number in 2009 they said IC was not included, also IBS was not included. Then, a year later they added IBS but when I called they said it was too late. I was too sick to navigate that stuff in time. I wonder if anyone here or elsewhere has found an attorney who has been successful against Accutane causing interstitial cystitis or that might consider my case?
    You might want to check to see if there's a support site for folks with Accutane problems --- there might be someone there who can suggest how to find an attorney.

    Good luck!
    Donna

    Leave a comment:


  • Wilis
    replied
    Hi Donna, thank you for your kind words. I do not have an attorney. When I called the Accutane class action number in 2009 they said IC was not included, also IBS was not included. Then, a year later they added IBS but when I called they said it was too late. I was too sick to navigate that stuff in time. I wonder if anyone here or elsewhere has found an attorney who has been successful against Accutane causing interstitial cystitis or that might consider my case?

    Leave a comment:


  • ICNDonna
    replied
    Originally posted by Wilis View Post
    I have similar story and a very severe case of IC. I was bed ridden for years and have been disabled for years. My IC started in 1994, the year I graduated high school. I was prescribed the higher dose due to one stubborn cyst which eventually had to be surgically removed. It took 12 years to get a correct diagnosis, historically it’s way under diagnosed according to that doc. The doc said the lining of my bladder was “cracked and bloody”.

    I think Accutane also damaged my immune response and my soft tissues, I have autoimmune issues now and degenerative disc disease since my late 30s. I’ve understood for years that Accutane dries out the entire body, especially mucous membranes including bladder lining. It’s similar to how Accutane caused Crohn’s disease, which damaged the lining of the intestine for many, and the manufacturer settled out of court.

    It’s so sad to read how many of our lives have been ruined by this drug originally developed for cancer. It’s too bad we don’t have legal recourse, those of us who were injured by it deserve help. It’s difficult to survive or have any quality of life when in severe chronic pain which causes chronic sleep deprivation for 26 years. I wish I had been well enough to find this group earlier. Is there any attorney working on this? It almost seems like there could be another class action for IC.
    I'm so sorry you are another who has severe problems after taking accutane. If you have an attorney, he/she can probably check to see if there are any class actions related to it.


    Donna

    Leave a comment:


  • Wilis
    replied
    I have similar story and a very severe case of IC. I was bed ridden for years and have been disabled for years. My IC started in 1994, the year I graduated high school. I was prescribed the higher dose due to one stubborn cyst which eventually had to be surgically removed. It took 12 years to get a correct diagnosis, historically it’s way under diagnosed according to that doc. The doc said the lining of my bladder was “cracked and bloody”.

    I think Accutane also damaged my immune response and my soft tissues, I have autoimmune issues now and degenerative disc disease since my late 30s. I’ve understood for years that Accutane dries out the entire body, especially mucous membranes including bladder lining. It’s similar to how Accutane caused Crohn’s disease, which damaged the lining of the intestine for many, and the manufacturer settled out of court.

    It’s so sad to read how many of our lives have been ruined by this drug originally developed for cancer. It’s too bad we don’t have legal recourse, those of us who were injured by it deserve help. It’s difficult to survive or have any quality of life when in severe chronic pain which causes chronic sleep deprivation for 26 years. I wish I had been well enough to find this group earlier. Is there any attorney working on this? It almost seems like there could be another class action for IC.
    Last edited by Wilis; 12-09-2020, 06:01 PM.

    Leave a comment:


  • abadham
    replied
    Re: Accutane

    I have been battling bladder issues for years. I took Accutane when I first started college and it took years to finally get diagnosed with Interstitial Cystitis. I am miserable almost every day of my life. The pain, the frequent urination. I never want to leave the house because what if there isn't a bathroom? My Dr put me on Elmiron and it made my joints hurt so bad, that one day I couldn't even walk I take uribel to help with the burning and frequency but the last few flare ups have been unbearable. I am going to my dr again on the 26th to hopefully try other options. Bladder stretching? Botox in the bladder? I'm at a loss and have become depressed because of this.
    I am with you on reporting to the FDA.
    Email me at [email protected]
    We should not have to suffer.
    Angela.

    Originally posted by MissM View Post
    Hello,

    I know this is a REALLY old thread but I took Accutane this year and have developed IC as well. The reason I am even trying to respond to such an old thread is I am wondering if you all reported these symptoms to the FDA? I am currently reporting this to the FDA and hoping if enough people out there do it will be reported to the drug manufacturers and other poor people will be warned against this horrific drug!

    Generic name is: Isotretinoin (goes under names: Absorica, Claravis)

    If you have any question let me know, I am dead set on fighting this. Perhaps even a class action lawsuit could happen if enough people report this.

    Thank you,

    Maryanne

    Leave a comment:


  • MissM
    replied
    Re: Accutane

    Originally posted by macey View Post
    Hi Maryanne

    Yes, I can understand your concern..is it listed on the leaflet under 'side effects' certainly seems too much to be a coincidence. My daughter (18) had a course of roaccutane, and I'll be warning her about this thread, although her skin does seem to have cleared wonderfully, I would be devastated if she developed IC. My latest flare seems linked to progesterone and menopause, and some of the effects of menopause are thinning of skin, as is accutane?? Hmmm
    Hi Macey,

    My doctors truly believe that because Accutane affects the mucus membranes in the body (dry nasal passages, dry lips, dry eyes etc..) that is somehow affected the mucus in my bladder. It isn't supposed to do that, but somehow it did! Accutane also does thin the skin, which can create all other sorts of issues. I hope your daughter never gets IC but I hope she is aware of the signs. I wish her the best of luck!

    It is not listed as a side

    Leave a comment:


  • MissM
    replied
    Re: Accutane

    Originally posted by my2boys99 View Post
    My 16 year old son is currently taking accutane (he's on his 3rd month). He has had very bad acne for many years. We tried every kind of acne treatment out there. The dermatologist had us try everything. Nothing was working. The accutane is working, but he still has acne right now. I don't like the possible link to IC. As far as his diet goes (Donna), we just have to make sure his cholesterol stays normal, as it can increase cholesterol. So, he doesn't eat a lot of red meat or saturated fat. He has to have his blood checked every month before we get a refill.

    My cousin took accutane when we were teens, and she's now 43 and hasn't had any problems.
    Hi My2Boys,

    I know many people who took Accutane as well and are ok. But I also know many people who developed all sorts of weird health issues. My friends sister developed IBD and had to have her colon taken out. My parents also know a boy who developed Crohn's disease after taking accutane. The thing is...sometimes those don't occur right away but later. Mine happened instantly. All I know is that this drug can be extremely harmful to anyone who takes it. I hope your son is closely monitored during and after taking it. But honestly if I could turn back time I would have never taken this drug. My health has suffered and it wasn't worth it. I wish you your son the best of luck.

    -Maryanne

    Leave a comment:


  • my2boys99
    replied
    Re: Accutane

    My 16 year old son is currently taking accutane (he's on his 3rd month). He has had very bad acne for many years. We tried every kind of acne treatment out there. The dermatologist had us try everything. Nothing was working. The accutane is working, but he still has acne right now. I don't like the possible link to IC. As far as his diet goes (Donna), we just have to make sure his cholesterol stays normal, as it can increase cholesterol. So, he doesn't eat a lot of red meat or saturated fat. He has to have his blood checked every month before we get a refill.

    My cousin took accutane when we were teens, and she's now 43 and hasn't had any problems.

    Leave a comment:


  • macey
    replied
    Re: Accutane

    Hi Maryanne

    Yes, I can understand your concern..is it listed on the leaflet under 'side effects' certainly seems too much to be a coincidence. My daughter (18) had a course of roaccutane, and I'll be warning her about this thread, although her skin does seem to have cleared wonderfully, I would be devastated if she developed IC. My latest flare seems linked to progesterone and menopause, and some of the effects of menopause are thinning of skin, as is accutane?? Hmmm

    Leave a comment:


  • MissM
    replied
    Re: Accutane

    Originally posted by ICNDonna View Post
    I have a friend who was put on this medication for severe acne. She had some really strict diet rules and some other guidelines she had to follow to help her stay safe on it. I don't remember all the restrictions, but do recall that at the time I thought it was severe --- even with my restrictions due to IC.

    Donna
    Hi Donna!

    Yes this drug is incredibly powerful. After doing research I have found numerous cases of accutane triggering IC, as well as Crohns, IBD, and Fibromyalgia. I now know of a girl personally who's colon had to be removed due to the affect of accutane, completely horrific. I'm hoping I can prevent other ppl from taking this risk, as my reaction was very rare but it happened! Also, I think many cases go unreported because the symptoms don't set it right away but even months or years later and ppl don't correlate it to the drug. Mine set in immediatly so I know it's the cause. Hopefully ppl will avoid it and try natural and topical remedies instead of this poison.

    -Maryanne

    Leave a comment:


  • MissM
    replied
    Re: Accutane

    Originally posted by macey View Post
    Hi Hon

    Are you talking about Roaccutane used to treat Acne? X I see you are~I have had 3x courses of oral roaccutane in the past and it never interfered with my bladder..if anything made my life easier, as at least my facial and back skin was absolutely clear...I had IC well before I went on Roaccutane, but we're all different, just thought I'd give another perspective..take care x
    Hi Macey,

    Thanks for sharing your experience. I'm glad this drug didnt harm you. I believe accutane has been the triggering event for me as well as other ppl. I typed in Accutane under search on these boards and was amazed at how many ppl it had affected! I'm trying to get IC to be put on the warning labels, as it was nowhere listed on my medication. Thanks for writing!

    -Maryanne

    Leave a comment:


  • ICNDonna
    replied
    Re: roaccutane

    I have a friend who was put on this medication for severe acne. She had some really strict diet rules and some other guidelines she had to follow to help her stay safe on it. I don't remember all the restrictions, but do recall that at the time I thought it was severe --- even with my restrictions due to IC.

    Donna

    Leave a comment:


  • macey
    replied
    roaccutane

    Hi Hon

    Are you talking about Roaccutane used to treat Acne? X I see you are~I have had 3x courses of oral roaccutane in the past and it never interfered with my bladder..if anything made my life easier, as at least my facial and back skin was absolutely clear...I had IC well before I went on Roaccutane, but we're all different, just thought I'd give another perspective..take care x
    Last edited by macey; 11-14-2014, 01:46 PM. Reason: adding something

    Leave a comment:


  • MissM
    replied
    Re: Accutane

    Hello,

    I know this is a REALLY old thread but I took Accutane this year and have developed IC as well. The reason I am even trying to respond to such an old thread is I am wondering if you all reported these symptoms to the FDA? I am currently reporting this to the FDA and hoping if enough people out there do it will be reported to the drug manufacturers and other poor people will be warned against this horrific drug!

    Generic name is: Isotretinoin (goes under names: Absorica, Claravis)

    If you have any question let me know, I am dead set on fighting this. Perhaps even a class action lawsuit could happen if enough people report this.

    Thank you,

    Maryanne

    Leave a comment:


  • CherylSLP
    replied
    I took it for 10 months myself and have always thought of it as one of the causes, along with the 2-3 years of antibiotics my dermotologist put me on for acne.

    Leave a comment:

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